Do we get easier times from symptoms?

[Bulldog07]

Hi ive been diagnosed for 18months now n I havnt had a better day with my weakness n being able to walk properly , infact my symptoms have got worse n I am practically house bound , I’m being referred to another neurologist for second opinion , as anybody else had this experience 👍

[Lucy-15]

Hey sorry to hear things aren’t improving even if slightly. I’m 7 years down the line since being diagnosed with functional movement disorder.

My brain was not communicating with my left leg …. Was dragging it and needed a stick always. After drop foot got better it seemed to leave me with the limp. Muscles spams, nerve pain, burning sensation etc…

What are your main symptoms?

Now I only use a stick on long days out or on a busy train etc .. I still have to plan and pace my activities every day … I still overdo it and can’t walk at all at times ! I’m now 52…. It’s been a challenge and as you will know super frustrating…

Hopefully you can see a FND specialist neurologist, if not seen one already? Then I had Neuro physio specialising in FND at St Georges hospital in Tooting, London. Where abouts are you based ?

[Bulldog07 in reply to Lucy-15]

Hi , I’m 51 n my symptoms first started years ago when I thought I was just clumsy , falling over nothing n dropping things etc , then bout 18months ago they took me in hospital cus they thought I’d had slight stroke but hadn’t , they said I had FND , my main symptoms then were leg weakness n arm weakness n fatigue , now my symptoms have gone so worse to no strength in both arms , on worse than the other , bad fatigue , out of breath , pins n needles in feet when I stand , going for wee often especially at night , somtimes my throat feels numb when I swallow , voice goes tired n croaky , can’t walk very far at all , n walk Round furniture n lean on walls in house , I’m on anti depressant n co codomal , looking forward to seeing second neurologists 🤞

[Brokendeer in reply to Bulldog07]

Hi experiencing Motor FND symptoms for 14 years, and know several other different FND sufferers I can honestly say your symptoms sound more Spinal than FND?

You might want to ask about Multiple Sclerosis (this can take a few years to diagnose correctly), Orthopaedic Spinal consult and or Hypothyroid which can affect the metabolism/throat and slow circulation down to get those kind of low blood pressure weak/pins and needles symptoms.

Good luck with next Neuro Consult

Look for the calm in the Storm!

[Bulldog07 in reply to Brokendeer]

Thankyou , yes I’m thinking on the same lines as you and other people I know have said the same , I’m definitely going to be asking neurologists about MS 👍to make sure I’m getting the right help 👍

[Bulldog07 in reply to Lucy-15]

I’m in Shropshire , main symptoms are muscles weakness in one leg n both arms , fatigue , can’t walk far n breathlessness , memory not as good as was , feel like something in throat n have to clear it 👍

[whirlygirl16]

Hi Bulldog I'm just like you, practically house bound and feel ill most days. I was diagnosed in 2019 with FND but had loads of symptoms well before then, so totally understand where you're coming from and things are getting worst not better for me. I live in Wales uk and we have no real help from neurologists here for FND just given a website to visit called 'neurosymptoms' which is a brilliant site I do have to say. I do also have to praise the nursing team here as well because they have been fantastic and are helping me with my bladder and bowel issues. I do hope you get the help needed for your FND and try and stay strong untill you get to see a second neurologist 🙂

[Bulldog07]

Thankyou for your reply 👍

[Keeponfighting]

Hi

I also have been bed bound for 10 years, FND is a horrible condition but I kept my hope in Jesus Christ as I couldn’t work or have life for myself. But God is good and helped me to return to work. I have been back to work since 1 year 6 months. I always advise people to perhaps do the four week inpatient rehabilitation program at UCL hospital in London. I had done it myself and also had two years of group psychotherapy.

Anyway stay strong and keep hopeful. God bless you.

[HenriettaPoultryfoot]

Hello Bulldog07.

I am also about 18 months since onset and 6 months since diagnosis. Everyday is a struggle for me. I have discovered that fatigue makes all other symptoms worse. It is hard for me to accept my limitations and to stop what I’m doing when increased fatigue first starts. I tell myself that it will only take me 15 minutes more to finish a task. That little extra amount of time doing something is all it takes for me to crash and burn. Result: a one - two days of rotten days for recovery.

This disorder has been a rollercoaster. Last Spring and Summer were horrible - hubby even referred to me as an invalid - grrr. September -November was better. My walking improved greatly however cognitive and fine motor skills did not. Since mid-December, I am feeling worse.

It is good that you are seeing another neurologist. Second opinions are valuable. I sincerely hope that this new doctor can be helpful.

HenriettaPoultryfoot

[Brusselsprout1]

Unfortunately I had this experience I was sent to a neurologist time and time again till the last one said 'we can't do any more for you' I said you can't leave me like this the FND clinic will help you,. I had my hopes snatched as I was referred to them 2 years a ago and I had nothing but being passed from pillar to post, I don't want to worry you , your experience may be different than mine, 4 years on disabled and housebound at 58 I still live in hope, thank god I like my own company 🤣

[Bulldog07]

It sure is a horrible time , I will keep u all informed 👍

[ClayKitten]

Hi Bulldog07, My teenage daughter was diagnosed w/ FND 2 years ago. She struggled to walk and spent most of the day in bed. She was seen by neurologist at Mayo Clinic in Rochester, Minnesota (USA). He sent her to the Pain Rehab Clinic at Mayo for 3.5 weeks. They retrained her brain/body to walk. She can walk very well now. She still has chronic pain and fatigue, but at least she can get around. I don't know where you're from, but you could probably find someone somewhere who could help you get into a pain rehab clinic or intense physical therapy sessions to retrain your brain.

Good luck to you.

mayoclinic.org/departments-...

[Rebeccaofsunnybrook]

I was getting better then I got covid